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HGDS

Supporting hemophilia and HIV research worldwide for over 20 years

The HGDS is a multicenter study of hemophilia and its complications (Hilgartner. American Journal of Pediatric Hematology Oncology. 1993). The study was established in 1988, and data were prospectively collected in 14 U.S. hemophilia treatment centers through 1996/97. A total of 333 children and adolescents between 6 and 19 years of age were enrolled. The ethnic composition of the cohort resembles that of the general population with hemophilia in the United States. The HGDS has investigated the effects of hemophilia and HIV on physical growth and maturation; immunological, neurological, and neuropsychological functioning; and the pathophysiology of HIV and hepatitis C. Research using the clinical data and stored samples from the study repository continues to the present using laboratory methods not available until sometimes long after original sample collection. Examples include the genetic research that paved the way for development of the protease inhibitors currently used to treat HIV; studies that provided clues to viral characteristics of HIV and hepatitis B and C; research to identify genetic factors associated with the development of inhibitory antibodies to factor VIII; studies of viral factors and how they relate to progression of HIV and hepatitis C; and research on the parenteral transmission of human viruses.

With over 95 peer-reviewed publications to its credit, the HGDS has been and continues to be a prolific study with well-established collaborations with other cohorts and investigators both in the U.S. and internationally. Although the initial aims of the HGDS focused on questions and problems related to HIV, the research base of the study has broadened to include examination of other complications of hemophilia, particularly the development of inhibitors and their relationship to cognitive development and academic achievement (Usner. Journal of Pediatrics. 1998), frequency and causes of hospitalization (Wong. Haemophilia. 2004), and physical growth and maturation (Donfield. Blood. 2007).